Autism – Late diagnosis, the process and my reaction

Autism

I was diagnosed with high-functioning Autism in 2016, aged 19. Originally referred to as Aspergers Syndrome.

Laura… I think you might be Autistic.

I had no knowledge surrounding Autism. I believed my Therapist had confused me with another patient. 

I succeeded through two nurseries, two mainstream schools (Primary and Secondary), and had recently finished my College life. And not once had the word Autism been mentioned to myself or anybody in my family. A Teacher said to me (after informing her about my referral), “I don’t think you seem Autistic, Laura”.

Sigh.

Increasing numbers of people are beginning to receive an Autism diagnosis later on in life as traits are better recognised and detected. Autism doesn’t end after Childhood. It’s a lifetime diagnosis, where we learn to manage our struggles whilst learning more about ourselves as individuals on the spectrum. I’m amazed that I managed to mask my symptoms for such a long time, considering the inability I had to act in School Drama lessons.

The mutual assumption seemed to be that I was shy, I would “probably” grow out of it with age. I became a favoured student as I just got on with things, paid close attention to minor details in my assignments and didn’t kick up a fuss. I rarely displayed meltdowns in education, but I would (and still do) run away from stressful situations. I held other “typically Autistic” attributes. Such as high sensitivity levels, routine favourability and difficulties maintaining friendships. I particularly despised having supply Teachers taking over due to sickness (for example), as this issued a change in routine and structure.

I’d been working weekly with my Eating Disorder Therapist for a long duration of time. We hit a brick wall in terms of treatment, following the difficulties I had with expressing my feelings and emotions (an essential component in taking therapies!) We tried a collection of techniques together, some of which worked better than others. At one point, we resorted to an “emotions wheel” where I had to point to the word in which I was feeling.

The process

My Therapist contacted Trafford Extended Services (Manchester), following a discussion with myself, my Mum and my Psychiatrist. My Therapist had detected “possibly Autistic” traits in me. Ie: The difficulties I have understanding sarcasm and taking everything literally, the struggles I have with maintaining eye contact and the ways in which I would use laughter to cope. I also found it impossible to tolerate change as it leads to distress and discomfort, which is why my Anorexia remains so complex and difficult to treat. It was then a waiting game.

The waiting game

I ran home every day waiting for the greatly anticipated referral letter to be pushed through the door. And, to my dismay, the wait lasted for 6 months. We attempted to speed up the referral process, but services are stretched and limited, which made this difficult. I became distressed, the wait was agonising and my mental state began quickly deteriorating as I spiralled further into my Depression. I tried to remain humble as I understood others had lengthier waiting periods than I had. I struggled to tolerate with “not knowing”. I had so many questions, and I evolved many unhelpful assumptions about myself and my abilities throughout the waiting process.

The assessment process

I then received an appointment, which involved 2 assessors from the team coming to my home. This simply involved an introduction about the service, the process and a general chat about my life, past and present. There were queries about friendships, family life, my interests and so on.

The assessors (one named Mike, the other… I forget) returned to my house 2 weeks later for an individual discussion with my Mum. I believe this was again, about my personal life, characteristics and such, but I chose not to delve too much into this for Mum’s privacy reasons.

Finally, I was invited to take part in a practical assessment away from home, with a mere 15 minute drive to Barnett House. I engaged in a test called an ADOS test (The Autism Diagnostic Observation Schedule). This took place in a small room under the observation of Mike and a lady I hadn’t previously met before, named Cath. I was given a brief explanation regarding the process and had to take part in various tasks to gain an insight into the understanding I have regarding different scenarios and situations.

Further information on ADOS can be reached, here:

I was tasked with reading from two different Children’s books, both containing no words, which heightened the confusion I had surrounding the task at hand. Later on, I understood that the aim of the task was to test my ability to understand and read facial expressions/emotions. To which I completely ignored, as I focused more on the objects and animals on the diagram.

Other tasks included basic demonstrations. I particularly enjoyed choosing random objects from an enclosed bag to proceed with telling my own short story. Of course, my story involved animals (my “special” interest). 

2 weeks later, I was diagnosed with Autism. Mike and Cath came to my house to reveal the findings of the assessments, where I sat anxiously with my Mum waiting for the unknown to become the known. Information of my diagnosis was issued to us extremely casually, almost like “Yes. You have Autism”.

My reaction

I was asked numerous times how I felt after receiving the news. I still struggle to pinpoint this as I felt multiple things all at once.

Relief? So…many…questions. 

Mainly, it was confusion. Numbness.

How exactly do you react to finding out you have a diagnosis you’d been oblivious about up until adulthood?

I struggled for weeks, months and years to accept my Autism diagnosis. I attempted to sugarcoat this in the beginning in a bid to hide my true feelings and thoughts. But I spent a lengthy period focusing on the negatives, using my “new” diagnosis to define myself and coming to terms with what this meant for me.

I learned to come to terms with my Autism diagnosis with the help of weekly appointments with my Autism support worker (Cath, who I mentioned previously) which lasted for approximately 16-months. And with the assistance of attending weekly group sessions (for ten weeks) amongst other newly-diagnosed adults, which covered a range of topics each week and also allowed me to learn more about other people, their experiences and their struggles.

University – Student life on the spectrum

Autism

I very recently finished my second university year, yay!

As an Autistic Student, I feel that my experiences and abilities to handle given situations naturally vary from those of “neurotypicals”, and whilst that’s okay, it’s a matter I’ve been aiming to shed a little light on. I am diagnosed with high-functioning Autism (previously described as Aspergers), the spectrum is vast, filled with people of all ages, races and abilities. And whilst we remain similar in various ways, we also possess our own personal differences and struggles. It certainly isn’t a “one word fits all” criteria. 

Shortly after receiving my Autism diagnosis, I maintained the idea that I would prevented be from going to University. I envisioned myself being unable to work with animals due to my Autism. My Therapist ensured me otherwise and reminded me that my kindness and compassion would guide me far. I failed to acknowledge that I was the same person and I hadn’t changed, I was just gaining a widened understanding into why I found aspects of life so difficult at times. But I believe I’m doing considerably well and may have advantageous traits. Such as an inability to lose focus of my special interest (animals!) time management and organisation.

I often receive messages, words of encouragement and praise congratulating me on my efforts and achievements. And my capacity to overcome the obstacles often lumbered in my direction, which I appreciate wholeheartedly. It’s overwhelming to reminisce on my previous years in education, where I remained unaware of my Autism, unaware of why I regularly faced challenging situations. And I guess, unaware of who I really was. Looking back, I understand why I struggled to fit in, why maintaining friendships proved difficult and why I followed perfectionist standards. The two years I’ve spent engaging in university student life have been the best. I’ve truly begun flourishing and finding myself, whilst slowly learning the art of self acceptance.

Admittedly, I believe that my Autism can never affect my abilities or be a hindrance on my pathway to success, as long as I persevere and reach out for support as required. I believe my Autism is another personal characteristic in which I choose to embrace, it isn’t a disease, I don’t need curing, but I do appreciate acceptance. To begin with, my Autism diagnosis proved to be difficult to accept and it constantly played on my mind like a fault. But over time, I’ve started to feel proud to be on the spectrum and the concept of being Autistic no longer equated to my whole world crashing down. My diagnosis encouraged me to take on new and exhilarating challenges – using public transport alone, moving to a brand new town alone and meeting new people (students and teachers). And 3 months ago, I flew over 4,000 miles away from home to spend 10 days in Florida for University. This once seemed impossible, but perhaps, things aren’t impossible once they’re done.

I refuse to jump into new situations and tasks with the “I can’t do this because I’m Autistic” mindset. I prefer to access support to address my worries surrounding the situation, while preferring to use “Why shouldn’t I be able to do this? My Autism cannot stop me”.

I understand and acknowledge the fact that I’m more sensitive in comparison to other Students. I often dwell on feedback on my work, focusing primarily on the areas of weakness, I constantly worry over slight changes in tone or behaviours and discredit myself for being in the wrong, or for unintentionally causing upset, because it has been noted that I have a tendency to be quite “matter of fact”. I easily become caught up in the feelings and actions of others, holding the beliefs that I should be the problem solver, the peace bringer.

I often struggle with fitting in, although I’ve been pushing myself very much out of my comfort zone this year, with facing communication barriers and meeting new people. I love chatting sometimes, especially with my Tutors, where an insightful conversation can always be guaranteed. Whilst I love having a wide selection of friends, I am 100% more comfortable within a small group. However, my Tutor recently reminded me that barely anybody fits in, but I believe we can all find ourselves surrounded with people who share our common interests. Ie: passions for animals. It’s also okay to embrace our individualities and our uniqueness.

My Autism often leads to uncontrollable and unpredictable meltdowns, usually when I’m alone, or faced with a challenging and anxiety provoking situation, such as tackling practical sessions/workshops as part of my Degree, encountering sudden changes or landing myself in a crowded, loud environment. I often run away, begin pacing or shaking and find myself in a panic. The room can feel as though it’s spinning and I’ve found that stressful situations can contribute to lightheadedness. I can become tearful and stressed and engage in hurtful coping mechanisms because I allow my anxiety to build up as I struggle to express myself verbally. However, I’ve thankfully been blessed with the most supportive Tutors who I feel comfortable confiding in about, well, everything! There’s no judgement, just understanding and the issuing of advice.

I find timings difficult and often stressful. I arrive to lectures considerably earlier than necessary because I have a fear of being late, but also stick routinely to the same seat in the lecture theatre. For instance, if I have plans to meet another person at 11am and they arrive later than planned, it’ll really throw me off guard. This’ll also lead to me blaming myself, sitting back and wondering if I did anything wrong, as I cannot think rationally in the situation and fail to recognise that a problem may have occurred. My Therapist and I recognised that I often need to find fault in a situation in order to cope, I typically find fault in myself as opposed to others and frequently say “it must be my fault if it’s nobody else’s”. And, as you can imagine, I find the late arrival of public transport and cancelled trains demanding.

My mindset can be unpredictable, leading to a wide variability in my moods. I understand that anxiety and depression often go coincide with Autism, but it’s not a one word fits all genera. Finding happiness is still a factor I am currently dedicated to and I often face more bad days than good. I find that I require more alone time in comparison to my peers. I love collecting my thoughts and devoting my time to healing. But usually, I can become exhausted from communication and need lots of time to rest and recover, following the physical and mental exhaustion I endure frequently.

I wonderfully share my diagnosis with Temple Grandin, a well-known (and extremely intelligent) Animal Behaviourist, who inspired me to take pride in my diagnosis. I remain fixated in my interest of animals. Goats in particular. I talk about them alot, to anybody who’ll listen. Meaning I often become engrossed within the topic and find it difficult to focus my concentration elsewhere. This is improving as I take other modules and widen my interests, but I’m perfectly happy being the well-known goat lover and I wouldn’t change my interest for the world. 

Being Autistic does issue me with my fair share of challenges and obstacles, but ones I am determined to conquer. Because I can, I will, and I am not defined by my diagnosis.

For further information on Autism, please visit the following source: 

https://www.autism.org.uk

Autism and me – Autism Awareness Month

Autism

It’s Autism Awareness Month throughout the whole duration of April and the second one I’ve proudly celebrated. (Yay!) I’ll regularly be updating my blog throughout the duration of April to share more in relation to Autism Awareness.

I first began blogging about my Autism in 2017, a year after receiving my diagnosis.

Just yesterday, my Tutor told me to take it easy after undergoing Autistic meltdowns and subjecting to my tendencies to give myself too many tasks to handle (oops!) I’m making it my mission to find a balance in life, between working and avoiding falling into a rut of overdoing things.

However I struggle to rest, but I love to write, so here I am!

Prior to receiving my diagnosis, I lacked knowledge on all things Autism, and I certainly had no understanding of an Autism Awareness Month. Heck, I thought I knew what Autism looked like… (I’ll see myself out).

I’m proud of my Autism, I embrace my differences and I’m proud of my passions. I wish for everybody to feel pride in themselves, their accomplishments and the strength of overcoming a bad day. The World needs more love and less judgement, to accept differences instead of attempting to cure them.

Despite everything, and the constant battles I face to accept myself for who I am, I wouldn’t change my animal-loving self, and I most definitely wouldn’t change my Autism. Autism isn’t a disease, why should we wish to cure it?

Everyone has a mountain to climb and autism has not been my mountain, it has been my opportunity for victory.

Throughout the years, my knowledge and understanding on Autism has expanded significantly. I’m aware of not only the difficulties I face on a personal day-to-day basis, but I made it my upmost aim to gain a wider understanding into mutual struggles shared by those on the vast spectrum, because I wanted to help. I found that it’s not only important to accept ourselves, but to accept others, too. Be kind to others, be kind to ourselves.

Though having said that, it’s apparent that no two people on the Autistic spectrum are the same, as often misjudged, and it’s vital that we establish that. The spectrum is large, filled with people of all ages, genders and races. We hold unique interests that hold high levels of importance to us, we communicate and understand things to a different degree and develop at different paces.

None of that is wrong, it’s diverse.

I find that I easily become engrossed in a subject area and devote my energies to that, I love sharing my interests with others, which is why I constantly talk about goats and the reason I’ve been super engaged with my Behavioural Ecology module. I believe that my Autism and my strong passion for animals alongside the bonds I continue to form with them as companions lead to me opting to go down an animal related career path.

Autism awareness is crucial, always. Our conditions don’t magically erase after reaching adulthood. I was diagnosed in my late teens and others have been diagnosed in their 50’s. Aspies face our fair share of challenges and are often misunderstood following the lack of knowledge in specific areas. Ie: sensory overloads and autistic burnouts. Our behaviours have a tendency to be recognised oppositely, our quietness can be seen as rudeness, our politeness can be viewed as evolving attachment issues. We can often become confused by small talk and sarcasm efforts, distressed in busy places and caught up in our favourite activity, but that doesn’t mean we should be overlooked.

It’s hard to adapt in an ever-changing society when change is one of your largest fears.

My Autism diagnosis changed my life, quite literally, for the better. I’ve evolved to an acceptance stage after periods of shame and embarrassment. I love opening up about my Autism, after recognising that I have no reason to be ashamed, looking up to fellow animal lovers including Temple Grandin and the wonderful people I met in my support groups. I’ve learned more about myself and my struggles, and have used them as stepping stones to achieve wonderful milestones. I’ve made friends, I’ve made memories. But most importantly, I’ve grown.

For more information about Autism, please visit The National Autistic Society here:

https://www.autism.org.uk